Ziggy le sait… La maladie d’Erdheim-Chester (ECD) est un cancer du sang extrêmement rare qui peut toucher de nombreuses parties du corps, notamment les os, le cœur, le cerveau, les reins, les poumons, la peau, les yeux et d’autres organes. Comme elle peut se manifester différemment d’une personne à l’autre, l’ECD….
ECD Awareness Month is here! In this special message, ECD Global Alliance Board President Diane Schriner shares how learning, connecting, and raising awareness can make a meaningful difference for everyone affected by Erdheim-Chester disease. Watch, share, and help us...
Bonjour ! Je m'appelle Ziggy, je suis votre guide de sensibilisation à la maladie d'Erdheim-Chester. Tout au long du mois de septembre, je partagerai des informations, répondrai aux questions courantes, vous présenterai des membres inspirants de notre communauté et vous aiderai à mieux comprendre la maladie d'Erdheim-Chester. C'est parti...
ECDGA Community, This week marks the beginning of ECD Awareness Month, and we’re starting with one of the most important steps we can take together: helping more people understand Erdheim-Chester Disease. You can’t recognize what you’ve never heard of. For many people...
Rare diseases need people willing to speak up. Every conversation about ECD can increase awareness and help patients, families, healthcare professionals, and communities better understand this ultra-rare disease. You don’t have to be an expert to be an advocate....
An ECD diagnosis can feel overwhelming, especially when the disease is something most people have never heard of. But no one has to navigate ECD alone. Around the world, patients and families are connected by a community that understands, listens, shares, and supports...
